There is no question that the awareness of borderline personality disorder is growing. We, as a community, have come a long way. We have started out from a grassroots level of awareness and education, have proceeded to the recognition of evidence-based treatments and finally, to what I believe is our future — have begun the discussion surrounding recovery.

There is no doubt that a book about recovery is needed, one that explores the topic in great depth. Despite our growth as a community in advocacy, there is still a lot of “doom and gloom out there,” as one interviewee put it. Could there be a place where one can explore ideas about recovery in a safe environment? It is my mission with this book to do so.

There are, however, other reasons I am on this quest, something more personal. True, it doesn’t get much more personal than having the same diagnosis as the people you are writing a book about, but there’s something more.

You see, I have always felt something was missing in my life. It’s not that I’m complaining. Don’t get me wrong — I am lucky to be where I am today. It’s just that all my life I found it necessary to fill an inescapable void. Call it a symptom of BPD, call it general malaise, whatever it is, I’ve grown accustomed to it following me around. I used to suffer from it but I’ve befriended it in my own unique way.

It was in my sophomore year of high school that we read Victor Frankl’s book Man’s Search for Meaning. That book changed the trajectory of my life and, more importantly, the reason why I’ve been on various quests. I thought, if I could only make meaning out of my suffering, the pain would be bearable. The pain would no longer be the end of the world; there would be a reason to continue on.

Everyone has his own specific vocation or mission in life; everyone must carry out a concrete assignment that demands fulfillment. Therein he cannot be replaced, nor can his life be repeated, thus, everyone’s task is unique as his specific opportunity to implement it. - Viktor E. Frankl

Since the age of fifteen I’ve searched high and low for my ultimate meaning. While I dreamed about volunteering in Tanzania I settled on a 545 mile bicycle trip for charity. I also thought I would find it in boxing, fighting the good fight, or perhaps speaking at respected institutions, sharing hope with my story. After all, “meaning of life differs from man to man, from day to day and from hour to hour. What matters, therefore, is not the meaning of life in general but rather the specific meaning of a person’s life at a given moment.” And although they’ve all been meaningful and am thankful for the privilege of those experiences, I still went searching.

So here I am with my next quest, writing a book. My reason, this time around, is rather clear: the way for me to make meaning out of my own life is to help give meaning to other people; to give something back worthwhile. Helping 100 people speak about recovery? That’s got to count for something. And if any of that hope turns into meaning, then the quest has been fulfilled. My reason in writing this book is to make myself work for something that enables others to have better lives. To work on something so that my life will not be in vain because yes, that old monkey-wrench would reappear, thinking that if I didn’t do anything my life would be meaningless.

And so by finding out a little truth about recovery, I can find hope for myself. By giving hope to others, I’ll feel like i didn’t waste my life. Yes, there is a certain, fatal human flaw in my way of thinking, but when it comes down to it, I can’t help it. I can’t live for myself. I can’t enjoy the passing of a day without knowing that I’ve tried. That’s the fight within me — the fight for those who suffer.

Ultimately, man should not ask what the meaning of his life is, but rather he must recognize that it is he who is asked. – Viktor E. Frankl

I don’t suffer as I used to. I’ve been given a second chance. I’ve got to do something with that second chance; life depends on it.

Researcher, clinician and professor at Mt. Sinai School of Medicine, Dr. Antonia New discusses recovery and borderline personality disorder. She specializes in borderline personality disorder, exploring the neurobiological underpinnings of this disorder as well as the implications of these findings on treatment. Her research focus is on impulsive aggression and she uses neuroimaging techniques, genetic studies, and laboratory assessment of behavior and treatment studies.

Click on the play button below to listen:

Some links to Dr. New’s work:

• Quieting the Storm of Borderline Personality Disorder.
• An Opioid Deficit in Borderline Personality Disorder.

Transcript:

I’m Dr. Antonia New. I’m a psychiatrist. My work has been predominantly in the neurobiology of BPD but also in trying to look at what are the core features, core phenomenology of borderline personality disorder and how can we understand it — and moving towards how can we help people with BPD recovery. It’s been a central point in my career.

AW: What is your definition on recovery with BPD?

AN: I think one of my patients said best what I think — which is the first part of the treatment is to decrease symptoms and keep people safe. But the idea is to not just develop and to be able to function but to be able to live. That’s her perspective.

I think the place we want to go is the place we haven’t gone yet in treatment. And that is to have people with BPD to have less moments with intrapschic pain, psychological distress. To diminish that sense of inner pain. That lasts longer than the symptoms, the behaviors that people do to diminish that intrapsychic pain.

So we’re pretty good at helping people reduce symptoms, reduce behaviors that are maybe self-destructive behaviors in many arenas. Many of our treatments are accomplishing that. I think it’s harder to accomplish a more contented sense of self and with that a sense of less pain. So that would be my definition.

AW: As far as the realm of neurobiology, is there anything we can learn about recovery?

AN: Well, neurobiology is as yet — our tools are pretty imprecise. So we know certain things about borderline personality disorder. Some of them are very specific to borderline personality disorder but most of them — the brain imaging findings for example — span a variety of psychiatric disorders.  So the model, for example, the part of the brain that modulates emotional responses is less active with patients of BPD in response to emotional probes. The part of the brain that typically is most focused upon is they amygdala, might be hyperactive when in response to emotional probes, signifying a hypereactivity in emotionality.

That’s true in borderline patients, but it’s also true in individuals with anxiety disorders and other things. So that’s not very specific. So I’m not sure as yet that they can be targets in any way mark recovery. Although there are studies going on, including here at Mt. Sinai, looking at what happens to those biomarkers after treatment with DBT comparing people who respond well and don’t respond. So there may be kind of a marker for recovery, but I’m not sure it’s causal in some sense.

So brain imaging findings are one thing. We do know more specific finding with individuals with BPD with repeated exposure to unpleasant circumstances and negatively valenced emotional probes in the laboratory… most people habituate toward it, so if you are exposed again and again to negative stimuli, the experience of how negative they are goes down. We know, for patients with BPD, that habituation as robust. In fact, if anything they increase their response.

So, that leaves patients in the real world with the experience, let’s say you do something challenging that’s made you frightened or upset. And you get through it but you have some emotional pain during it. It’s harder to experience the success of that.

For example, if you have been afraid to go on a trip because there will be people that you care about but you know will get into conflicts with.  And you do it, but there are moments of distress. Actually, you end up feeling that you remember more of that distress than the sense of having that distress gone down because you accomplished what you intended to do.

So what does that mean for recovery? If we can explain to patients that in fact they have a harder time decreasing their responses — and that’s part of what DBT can do which is to teach people how to use different strategies to decrease their affect, their emotional responses by using other kinds of soothing strategies and skills to calm down — that requires more deliberate effort for patients with BPD. But in fact is accomplishable. So that’s the link between neurobiology and treatment.

In terms of recovery what would be ideal is not to have that hyper-response in the first place and not to feel so vulnerable to those emotional stresses.

So there’s another arena that we have looked at that I have written about and that Barbara Stanley has written about…and Larry Siever. There is a theory or model for BPD for which there is some evidence that has to do with the opiate system.

Now in human beings, all of us have circulating opiates and keflans? and endorphins. We don’t know precisely why they are needed but they do for example, when you get hurt by something, it in fact hurts a lot in the beginning, it attenuates and then goes down. There are all kinds of ways in dealing with minor injuries or injuries that allow you to go forward and function and perhaps it’s very adaptive.

One theory for patients with borderline personality disorder don’t have as robust of an internal opiate response. The opiates are not only involved in pain and it’s sort of an interesting… there are pain abnormalities have been described. But it’s also true that opiates are involved in attachments, soothing. So when a baby is cuddled by his or her mother, opiates are part of the soothing mechanism. That’s been described in great detail in animals and we as people are undoubtedly no exception to that mammalian response.

So apart of being soothed in that attachment relationship is in fact the endogynous opiates. So if in fact people with BPD have too little opiates, that soothing doesn’t happen as successfully. It also gives a promising idea of why cutting happens. If there’s too little endogynous opiates and that it’s part of the way we regulate our mood, if you cut yourself then the opiates are released, so there’s an attempt to bring back that experience, to bring opiate levels back to normal.

So there are attractive ideas for which there are only some proof — brain imaging and genetics proof — and so there’s been a lot of discussion in using opiates in the treatment of BPD but there’s some conflict about whether there’s a risk in creating addictions. That’s some of the ways neurobiology links to possible methods of treatments.

And treatment isn’t precisely the same thing as recovery. For those of us in this field, I think none of us are satisfied that we have great treatments for BPD. We have at this point, no FDA approved drugs for this disorder. And that’s pretty unusual on psychiatric disorders. Many medications are used and we have some evidence that they help, but they help a little bit.

So that’s one issue, the issue of pharmocology. And we have quite effective psychotherapies, at least in terms of DBT and Mentalization Based Therapy, which have been very well studied. Those two forms of treatment end up decreasing symptoms substantially. But it’s not clear that they increase people’s ability to function better. People are still left with some difficulty fully engaging in work life. And sometimes difficulty engaging and sustaining relationships.

I think the DBT model, relationships improve. And I know M. Linehan is working very intensively on creating a sort of, second phase of DBT… reconstructing job skills to help people. So that is a promising development. So recovery would be to have satisfying relationships, work effectively and have less intrapsychic pain — which is possibly the mechanism for which those things are interrupted.

And MBT has been developed in the British mental health system and has worked extremely effectively. But I think the context of the population it’s used in Britain are people who have many other comorbid problems and so while the BPD symptoms are decreased, there’s a lot of collateral damage in there lives about what’s happened, so it’s harder for them to get back on track and work.

Transference Focused Therapy has been a therapy that has been studied from evidence based approach less thoroughly. But I think clinically it aspires more to full recovery. It aspires to deal with that intrapsychic pain. Therefore the aspiration is to reach a fuller point of recovery. And whether TFP does that more successfully or whether DBT when it’s followed by the secondary step in engaging in job focus is an open question, I think we don’t yet know the answer.

AW: What do you see in the future of research and recovery?

People are starting to figure out what is the role of engaging families. People are talking about integrated treatments, integrated model using pieces from all the different treatments. There’s another avenue of treatment, sort of the sequential model that the DBT model that’s being examined in Seattle which is the DBT recovery of symptoms and then moving to a more into a systemetized way of getting back into the job market. One is that strategy and the other is the integrated models.

I think there is an increased effort to realize that probably for people with BPD there’s going to be a life-long sensitivity to emotional changes — and maybe even a hyper-sensitivity to interactions with others. And that in some ways, that can be very painful but in others can be a gift because that allows people to really be sensitive to the people around them. It’s a perceptiveness. But in fact the ability to not over react to that perception and to kind of hold it in mind, but use it to weave a narrative that could be potentially very creative impulse but in fact I think it often leaves people barraged with intense feelings in the context of relationships.

The idea is, how can we get beyond decreasing cutting behaviors, impulsivity to creating not only more relationships but satisfying relationships, a less turbulent sense of self, a less vulnerability about how one feels about oneself, and creating stable relationships, and the ability to work and this sense internally of being less fragile. So that would be the goal and we don’t know yet and my own take on this, though I’ve spent my career on neurobiology — when you go to meetings […] it strikes me that we in neurobiology have been looking for medications for BPD and the effect size is small. Even if they work, they work just a little bit.

But when you look at the psychotherapies that work, the effect size is big. People really do get better. So I think we need to be much more focused on the strategies within psychotherapies to help people. That isn’t to say we should ignore things like the opiate system or other things as possible mechanisms. People have tried neuropeptides and oxytocin and I think I think it’s an open question on whether they are helpful or not. It’s not that there’s no psychopharmological approach is just that so far the effect size of that pharmocology has been small compared to the much more robust effect of therapy.

AW: How does the feel as a neurobiologist?

AN: You know, that’s a very good question. It has lead me to shift my career a little bit. So that perception lead me to put on a grant with Marianne Goodman to use DBT in treating suicidal veterans — not all of whom have BPD. But that’s a very much more clinical grant. She’s actually taking the lead into that grant.

I also moved to being the director of student education because I feel as if teaching people how to behave, not just for people with borderline personality disorder, but the role of doctors in learning to recognize mental illness in a broad sense and to destigmatize mental illness and to treat all their patients with respect is hugely important.

And it has lead me to begin to contemplate collaborative research in psychotherapies which is a shift for me. I don’t take it as a kind of insult to my career, I take it to be — I mean I may also do a pharmological treatment with an opiate but as yet I haven’t determined that there’s one I’m really happy with in terms of the risk of abuse and so there are various opportunities that might be developing in terms of new drugs but we’re not there yet.

So my approach is not to be discourage by that but to be intellectually honest about that and to say, okay, given what I perceive, where can I be most effective to people.

AW: Do you find any myths to BPD & recovery?

AN: Terrible problems with this. Yes. I think there is — and this is a part of the education piece about what I do and that is to create… every year a hundred and sixty doctors who don’t share those myths. I think there’s a general sense for people with BPD that they are untreatable. And if you read on the internet, there’s a lot of misinformation about that.

I mean I believe in telling people this is what your diagnosis is because first of all I think a lot of doctors don’t even say you have BPD because there’s a sense that somehow that’s an insult rather than a diagnosis. I think if you don’t tell people, I think you deprive people of the opportunity to look for evidence based treatment; to recognize, when I tell my patients this is what you have and these are the features, they typically are relieved that it’s a recognizable syndrome and that it’s not something bizarre about me.  So I think that that is actually enormously helpful. I think, though, you can look at the internet and find some pretty scary things about the trajectory. Whereas the evidence like in Mary Zanarini’s studies and long term psychotherapy treatment studies show a lot of improvement — not full recovery at this point, we’re working on that.

So I think there’s a lot of reason to be optimistic. And I think some of the stigma about BPD arises from the sense that doctors and therapist have that it’s untreatable. If it’s untreatable then we feel bad about ourselves because we don’t know what to do… because we like to know what to do. When you learn what to do and you have tools to help your patients, suddenly it’s not an insulting diagnosis. It’s actually an educational diagnosis. That’s the transition that we need to make…

Anybody engaged in effective treatment stops having that sense of being hopeless. I think that treatment isn’t widely available in this country. There isn’t the expertise. And part of it is because it’s a psychotherapy-based treatment, there aren’t the resources available to  people with BPD to get the proper treatment. People don’t have the money to do long term therapy…

AW: Do you think people with BPD carry myths of their own?

AN: Well my patients often do because they’ve often been treated a lot before I see them and often not successfully. For example it’s very common for people with BPD to be treated for depression. And people who have BPD and depression are not very responsive to antidepressants as people who just have depression. So people feel like, oh, I’m hopeless. I can’t be treated because it didn’t work. Well, the wrong thing was being treated, so it didn’t work.

So in terms of self experience, I don’t know. Some of my patients feel that they are bad or something is deeply wrong with them but I think many come to the point that that has arisen out of many interpersonal conflicts that occurred. And so as you begin to get people to be less reactive — to decrease that reactivity — so that the sense of being bad is less reinforced because relationships become more successful.

AW: I always have that sense of I’m not good enough. It’s something I always have to work on. But my recovery has been more about believing in a sense that I can do it. And then doing the work that my therapist and I have planned and actually pull through it has helped me.

AN: So the success in getting through it allows you to get better. I think that’s what I mean about intrapsychic pain — sort of that terrible sense of self. That there is a possibility of addressing it, but to recognize their successes as successes, so when they’ve mastered something then that’s a mastery and really good.

I think it’s hard. Everybody struggles with different things. But recognize that there’s this nascent — and I believe heritable vulnerability, this vulnerable sense of self and hyper-reactivity — recognizing that and realizing that people struggle with anxiety and depression… I think the trouble for BPD is that most of the time people have fairly unsuccessful treatment along the way, so that reinforces the sense of failure. I would hope that would turn around as people started to feel that they are in fact mastering. That self esteem that feels terrible — that feeling of deep vulnerability — begins to shift because people begin to have successes. Even those successes can be in baby steps. So [for example] commitment to treatment, finding an alternate strategy that isn’t self destructive to deal with distress.

As those things progress that begins to heal, that would be my hope anyway.

AW: in your clinical experience, do you see any characteristics or traits that with people who have been more successful in their recovery?

I think the common thread is people who are able to draw other people to them in some way. People who can begin to sustain those friendships early one. It doesn’t have to be many but to just be able to pull that in.

And the second thing I would say is the ability to make a committed, attached relationship with a therapist with an aspiration to get well. I think the ability to attached to a therapist and to feel like there’s a partnership that’s gone on and that partnership is one of mutual respect and that the therapist is on his or her side; to be able to perceive that as a healthy relationship.

I think the basic commitment to therapy and the commitment to getting well and the ability to develop a trusting relationship with the therapist, and to have a few supportive people around who can also perceive the baby steps of success — that’s where the family piece comes in by the way — I think that is the most predictive of success.

There is some data relatively high IQ can be an advantage because you can use the cognitive strategies a little more — I’m not sure if there’s enough evidence. My own feeling is that it’s the ability to attach and trust a treatment that’s most predictive.

AW: Anything else about recovery and BPD?

AN: Well, we have work to do. To try and figure out how to help people feel not only that we have mastered the symptoms but that they’re thriving. That’s really what we want for all our patients, to help everybody thrive. And that thriving could look different for different people.

For some people, thriving might not involve a committed romantic relationship. Some people their thriving is in a different arena. For some people that attachment can be met by friendships and they get a lot out of their work life and for other people, the committed, personal relationships are very salient and work life could be a little bit secondary.

I think it’s individualized and for people to thrive is what we’re aiming for. I don’t think we yet have full enough information to how we can get to that stage. But that’s the next task.

In this video, Dr. Frank Yeomans, specialist in Transference Focused Therapy, discusses recovery for those living with borderline personality disorder.

Recovery in Borderline Personality Disorder from Amanda Wang on Vimeo.

Transcript:

In terms of recovery as we see it… I would say to generalize, there are two different trajectories — and this gets back to how some people progress differently from others. In the best of cases, a person looks like they’ve just moved beyond having a borderline disorder. The way we would talk about it clinically — perhaps slightly theoretically — is they have just integrated their sense of self.

They have taken aspects of their psychological and emotional world that they used to project and experience as outside of themselves — very often angry or aggressive parts of themselves that were always perceived as the outside — reflect on them, see, “okay, that’s apart of me,” and our message to people is, “you know it’s better if something is in you to recognize it because then you can learn to master it.” If you don’t recognize it, instead of you being able to control it, it controls you.

So people integrate these fragmented and unacknowledged parts of themselves, they develop a much better capacity to modulate their emotions, when they’re really angry about something that happened, they can remind themselves in a way that’s partly an effort to begin and then becomes more spontaneous, “Yeah, I’m really pissed at so and so, being so late for dinner, kept me waiting, but then, last week they did this favor for me. So like, to bring the different parts of experience together so it’s woven into a context that includes negative and positive and therefore if not eliminates, significantly cuts — I’d say eliminates — the extreme reactions. One certainly has a right to emotional reactions, both negative and positive, but it just eliminates those extreme reactions — it just wipes out any other feelings about the person in the moment.

You have an integrated sense of self and an integrated sense of others and you learn to live with the complexities of yourself, of the world, and you learn to navigate life going through the rough spots without giving up, and going through the happy spots realizing there is no paradise, and therefore you’ve got this more mixed and complex, realistic view of things. And with that, often people can go on in their lives and be — the way I put it — as happy as a person has a right to be in the world, since I think it’s naive to think we can be totally happy. Every life has its difficulties and its limitations, its regrets and so on.

I would say that this lady I quoted is an example of that, because here she is, not only catching herself, but beginning to notice her projections — her reading into situations. Her imposing things on to others that really come from her. and as she observes that and is cognizant of that her integration in the world became much better. She was a woman who hardly had any friends because she was convinced that everyone didn’t like her because they might not return her phone call. Now when you get right down to it we’ve all had that experience but if we all concluded a phone call that is not returned means the person hates you, then none of us would ever have any friends because we’d just isolate. So she was able to integrate these momentary disappointments into a broader understanding of who the people in her life were, to not kind of eliminate or just be blind to the positive side of things, and therefore she could experience others with both more understanding, more compassion for herself and more compassion for them. And now she’s having friends, and she’s dating in a way that’s more satisfying than she was doing before, she’s making moves in her career that look very promising… so that’s one trajectory.

The other trajectory I was saying, to generalize on my outline, two possibilities, there are some people, who as I see it, never stop having that initial, very negative reaction you know, there’ll be a trigger event, there’ll be a quick spontaneous, oh they hate me, or this is hopeless, or I might as well just give up.  They catch themselves — it’s almost something you can measure in time, the degree, the length of time the person requires before they catch themselves.

And as treatment  progresses, they can catch themselves almost momentaneously. It just takes a very short time for the quick, familiar and old reaction — and the correction and adjustment. But, at least in my observation, this particular group of patients don’t, as the first group I’ve mentioned did, get beyond having that first, extreme and usually negative reaction. They can observe it more quickly, correct it well enough to move on more realistically and successfully with the situation, and I suspect, there’s something in their brain chemistry that is just prone to quick and extreme reactions. But the more evolved cortical parts of the brain have learned to see that when it happens, identify it as something they have to deal with, and then gain control and mastery over it.

This week marks the sixth year since i received my diagnosis of borderline personality disorder. It was the first time I went into a hospital program — I was so scared I would be swallowed up by that place.

After a few weeks my social worker sat me down, took the big book out and started reading these nine symptoms to me. It was the first time I heard something that described what I was dealing with in such detail i thought she was reading my autobiography. She said, “Have you ever heard of borderline personality disorder?”

The rest, as they say, is history… but it’s actually become a living story. A story I go back to and reflect on — the hard work, the practice, the steps back and forward and the dedication from both me and my support system — the stuff we had to do in order to make it to this place we call recovery. I’m still living the story, and on a day like today, much to be proud of, six years later.

So what have I learned in the past six years?

1. It takes time to trust your therapist, but at least trust in the time.
After going through my fair share of talk-therapy treatment, psychiatrists who wanted to delve into my past, and another who consistently fell asleep on me, there were plenty of reasons to be weary of shrinks. But this was the first time I was doing anything specific to borderline personality disorder (dialectical behavior therapy) and even though I didn’t trust her, I trusted the program. After all, I made a commitment for the whole year and I wasn’t about to back out of that. It took me one year to finally trust my therapist. There was nothing wrong with her, per se, it was more my inherent inability to believe someone would be willing to help me, that I was worth someone’s genuine interest and willingness to see me better my life. With the help of coaching calls, I knew I wasn’t alone in trying to battle my urges. I was accountable to her, which in some weird way helped me trust the relationship more. Six years later I am still with the same therapist and I wouldn’t have it any other way.

2. Take what you’ve learned inside the therapist’s office and practice it outside the office.
It’s funny how often I come into the therapist’s office feeling fine but as soon as I step out, all of my problems seem to reappear. I ask myself, what just happened? I think the idea is that we talk about certain behaviors to change and yet I go back to my old behaviors as soon as I leave. It’s great to talk about but better to actually change your behaviors in the way that it was discussed. Or else you’ll be stuck. Been there, done that. It’s hard to change our ways. We’re stubborn and think we know better. But give that change a chance.

3. When it’s hard to believe in yourself, accept where you are, throw yourself into participation and learn from others.
It turns out that after spending a month and a half with mostly the same people at the hospital, the group setting was perhaps one of the best things to happen to me. I realized how much I gained through listening to other people, people who struggled in similar ways, in sometimes more desperate ways — all people trying to cope with suffering the best way they knew how. Some were funny, some were quiet, some were always willing to lend a helping hand, and some were quite ill. All of them gave me a sense of compassion for myself and others who struggled. It was through the group setting that I realized I had a voice too. People listened with the same kind of compassion and understanding I have not come across in my 27 years of living.

4. Research, reach out and write.
Finally my craziness had a name (and yes, I wasn’t at all crazy to begin with!) and I was going to get to the bottom of it. I began to read whatever I could on the subject, especially research papers. I knew what I could read and what I couldn’t — research, textbooks and and clinical observations about BPD were my go to; memoirs I stayed away from because they were oftentimes too triggering for me. But I read as much as I could. It helped me understand my therapist a little better; it helped me understand what I was learning and why I would benefit from it.

I also began to reach out to organizations, build a support group and talk to like-minded people on line. I went to conferences and approached the speakers. I establish relationships to help other people like me, whether it was in person or online.

Which leads me to writing. Whether or not you write for an audience of a thousand or an audience of one (yourself), writing  somehow provides meaning, continuity and perspective. Writing has been my savior when I couldn’t find someone to talk to. Writing has been a voice of reason when behaviors wanted its way with me. Writing has been my teacher, my inspiration, my lifeline.

5. Find meaning in suffering.
When I can’t seem to make any sense out of my suffering, writing helps me lift of my suffering for something I deeply care about. Sometimes I say, you know, this really hurts, but I know so-and-so is really going through a difficult time, so I ask that my suffering may serve to lift their burden somehow. Sometimes it helps pass the time until the urge becomes more bearable. I don’t know if it actually helps the other person, but it helps me connect with other people who suffer and allows me to be more compassionate towards others, including myself.

6. They are all little steps. Celebrate them all.
When we go into treatment, sometimes we think we’ll progress with leaps and bounds, that all the suffering will be over. Maybe it works for some people, but for the majority of us, progress comes in little steps. They may be so minute, but we need to recognize them still as us moving forward, us becoming more resilient, us learning from our mistakes. To recognize our progress and even our steps back (that they too are progress just by recognizing them for what they are) is a cause for celebration. I think we need to do more expression of joy that way, more celebration for what we’ve accomplished.

Now it’s your turn. I would love to know what you have learned since receiving your diagnosis. Feel free to post in the comments section, thanks!

I had a chance to interview a woman who was diagnosed with both borderline personality disorder and bipolar disorder. In this excerpt she realizes the work necessary for her to achieve a sense of progress and recovery.

Click on the play button below to listen:

Transcript:

It’s helpful to talk about how scary it is when you first get [the diagnosis] and then it’s helpful to say okay, what do you do, what are the concrete things you do to soothe and stuff — that’s what DBT and group are about… but what do you say to someone who just got the diagnosis?

I know it’s terrifying but don’t deny it.

There are those people who want to come to a Meetup or a group therapy and seem to want to wallow in their pain. And they seem to want to compare their pain to one another and they seem to not want to change.  There are other people who won’t even admit to having the disorder. They just say, nope, there’s nothing wrong with me and they continue to drink, continue to blow up, continue to fight with people and get into a depression and put their problems on their family and have their family and friends constantly having to come to the rescue. And then standing on their own two feet and fucking up again and doing all those things — all of those things are driven by this.

It’s not a joke. It’s not going to go away. You can’t just pick yourself up by your bootstraps. You need to take it seriously and need to pay attention to it. And it requires a great deal of work and requires massive changes in your life.

I mean I stopped drinking. I was drinking between a six pack and a twelve pack — not every night but maybe every other night. And it wasn’t getting me drunk and I was doing it in my own house, to the point of blindness… and then getting very little sleep.

And then, I just stopped drinking. I had to walk away from friendships that were over a decade old of people I used to drink and drug with — that’s what we’d do. They were the only people I knew. I had to cut them. I just couldn’t do it. And of course it’s difficult to hear that — they didn’t want to hear it and I didn’t want to have to say it but I couldn’t be around that. I just can’t go to a bar, guys, because I can’t deal with that anymore. I want to get healthy.

And I have to take medication that’s supposed to make my hair fall out and make me fat — for the bipolar — and I was like, that’s not going to happen to me. I’m going to get in shape. I’m going to lose weight because the medicine is going to try and force my body to stop processing and those things are not going to happen to me. I have to be on the medication because I tell you what — that roller coaster ride I was on? I can’t do that anymore. I can’t do that to myself, I can’t do that to my family members and friends. And I don’t want to be in that place anymore.

So, for somebody new who just gets this diagnosis needs to take it very seriously. They need to try it. That was the biggest thing. My friend Cath, whose brother killed himself said, “Just try it. If you don’t believe this diagnosis, write it out, get a big piece of butcher’s paper and just write it out.”

Well I didn’t have butcher’s paper so I went to Pearl Pain and got the shortest roll they had, about 15 feet long and I didn’t think I was going to need it all but I started writing and by the end of it, the 15 feet were rolled out. And it was everything. When I stood back and read that, I could see the pattern. Like it was obvious to me: highs and lows and fights and firing and losing a job and changing careers and shopping sprees, all of these things — really tumultuous relationships, suicide attempts — for years and years and years. Since I was a child — my first suicide attempt was when I was eleven.

And it was only when you look at it in front of you and then you realize, okay, maybe it’s undeniable that there’s something amiss here.

And then try the treatment. It doesn’t have to be medication — the medication certainly helps. And I have bipolar, so for me it is completely controlling the bipolar and you know, the borderline, it’s something that has to be dealt with with long term treatment, it just is. You have to rewire your head and not always react in an emotional state of mind with the slightest amount of stimulus.

But try it. Give it six months. Follow the rules and be a good little girl or boy for six months… and if you really, truly don’t see and improvement then, well, fuck them. They were wrong and then go back to your life.

But don’t live in denial about this.

And now that life is clearer — because I’ve tried it. I’ve tried the steps an things are better, life is getting better slowly but surely. And I don’t want to mess that up. I’m not going to throw that away over a bottle of beer or a line of cocaine or deciding suddenly that I’m well enough to stop my medication or any of those things.

This is too precious for me because all I wanted to do was self destruct before and run away from my feelings. Now I tried it. I wrote it all out, I saw the patterns, I tried it and life is better. And there’s a lot of stigma and a lot of doctors who say we won’t ever get better and there’s a lot of misinformation for family members out there where it’s like, “doom and gloom.”

I saw a website out there that said, “Always have a plan B because they always will revert to this behavior and abuse you and like, all of this nightmarish crap, no wonder we have this feeling that we’ll never get any better. But I can tell you, you will if you do the work. If you admit it, embrace it, and get patient with yourself — it’s not going to happen overnight. And take it one breath at a time, you will get better. And it does get easier. But you have to admit it and you have to do the work.

I had a chance to speak with Dr. Seth Axelrod on recovery and borderline personality disorder.  Dr. Seth Axelrod is an Associate Professor of Psychiatry at Yale School of Medicine as well as the Dialectical Behavior Therapy Team Leader at the Yale-New Haven Psychiatric Hospital Intensive Outpatient Program. Each spring he also co-chairs a Yale conference on BPD that is co-sponsored by the Yale University School of Medicine, Yale-New Haven Psychiatric Hospital, the National Education for Borderline Personality Disorder, and NAMI-Connecticut. I would love to know your thoughts and comments about what we talked about.

Listen in the player below by clicking on the play button:

Dr Axelrod on the stages of recovery:

So in terms of how individuals get [to recovery], in my experience doing dialectical behavior therapy, individuals who are starting from a place where there might be a lot of out of control emotions and a lot of out of control behaviors and a lot of life chaos… the first piece of work is committing to some length of time of agreeing to work on making it better, work on collaborating in treatment and working with my team, that will put in X amount of time where they committing to working real hard and putting in regular attendance and we’re committing to work really hard and putting our full self into it and that together, working through this model, that after some length of time, that we can then kind of assess have we made progress.

And the point of that is for an individual who’s chronically miserable and chronically looking for ways to escape their life or their experience — to kind of put aside that decision that it might be okay to escape life — and say okay, let’s put some effort in seeing if we can make it better and see if that works.

In my experience you need a little bit of a window to work in order to make the progress. If it gets too tight, moment by moment, convincing the person to stay alive, without any kind of agreement that we’re going to see if we’re going to improve the person’s life, then it’s hard to see movement happen.

So I see it as my work to get that kind of commitment from an individual, to give a window of opportunity. Once that’s there, often the first order of business is helping people develop skills for just getting through life without the self-destructive behaviors, particularly the suicide and self-harm kind of behaviors that often show up.

A lot of that work is helping them arrive to the conclusion and get on board with the idea that it’s worth it to tolerate situations in order to then be able to buy time and get opportunities to start improving their life. So once you have a foundation of skills, which are essentially, I can get through life even when it’s extremely painful and things really aren’t functioning, things really are broken in their life but they have the tools to say, okay I can stay alive and stay in tact and put my energy into coping instead of putting my energy into suffering and doing things that would make it worse, make more problems.

That once they have that foundation, then the windows of opportunity for actually putting work into improving their lives get bigger, because the individual spends less time acting in crisis ways and end up having less proportion of their time where they’re kind of on the edge of are-they-going-to-survive-or-not because they have confidence they can survive.

At that point, from a DBT perspective, it’s loading up a lot of other skills, for being effective in communication and relationships, for learning about emotions and developing a new relationship with one’s own emotions, learning ways to manage one’s emotions, and tackling specific parts of their life where they haven’t been successful. We don’t see it as any fault of their own, necessarily, but whatever the circumstance is, that they haven’t been able to have stability in living, work or relationships. We start tackling those problems.

And gradually the person feels more competent dealing with the problems of life as they show up. The person starts seeing more successes in building or fixing things that are broken. And perhaps starts initiating working on plans, working on goals that have been stuck or really been put aside. And the person starts to develop confidence in their abilities and appreciation for their life — living in a way that’s consistent with their values, that’s consistent with their self-respect, that’s consistent with goals that they set for themselves.

And once the person is doing that, I think they are in recovery. They may still struggle with episodes of mood problems, they might, in my experience, still have very strong emotional sensitivity, they may still have times where their mind reacts with thoughts that can be very disturbing or get very rigid at times but, they’ve got tools for dealing with it.

They’ve got tools for taking that step back, for using supports that they’ve been building, more effectively using professional supports than when I first started working with them. And they see themselves on a task, living — participating in life. So that’s what I see in my experience of what is the process of moving towards recovery.

And for the people I’ve seen who’ve gone that far, I think I’ve seen a fair amount of acceptance — if this is as good as it gets, in terms of managing thoughts and emotions — that it’s worth having a life that way. It’s workable, if not perfect… having thoughts of suicide pop up, for example… it doesn’t have to mean that life is not worthwhile. I’d love to see it go further than that, where individuals don’t necessarily have to deal with thoughts and urges pop up or mood episodes. And hopefully will continue to do better.

Dr. Axelrod on the fear of recovery:

I think there are lots of reasons why that comes up. In the biggest picture of it, individuals have gotten this far in their life by responding to things the way they do. Whatever the behaviors are, no matter how destructive or self-destructive the behaviors are, this is what the individual has come up with to respond to the problems that life sends them, the emotions that they have… and one thing that I think gets lost a lot in talking about individuals with borderline personality disorder is that they are often criticized for their behaviors; criticized for reacting the way they do, and they don’t see it themselves.

And I think that these individuals who have problems with the way they are coping, the way they react and lose control, they’re aware of the fact that what they’re doing doesn’t work and they often have a lot of self-hatred and self criticism for being reactive the way they are, and yet, they haven’t found other things, other ways to cope. And when they try to cope in other ways, it has blown up.

Usually they’re attempting to do some kind of coping that they’re told to do, but it’s not, it doesn’t sufficiently meet their needs. When they’re having far more difficulty controlling their emotions than others and then they are told that they should control their emotions like others, and they try to do it, it fails.

I think that individuals with BPD have tried on their own, so many different ways to cope that fail over and over again, and they often been in many therapies that have failed over and over again. And so they cling to what they’ve got because at least it’s gotten them this far, at least it takes away the pain and the suffering in short term at least. While they are in misery, there’s a safety in that. And I think that general principle is true across any therapies where a person is having to change the way they are dealing with their problems and take on new behaviors.

New behaviors are uncertain. They don’t come with guarantees. Any specific, here’s something you can do differently, will become more or less successful, particularly when you’re learning it for the first time. In the process of learning there’s going to be mistakes and things aren’t always going to work out.

The thing that I try to help individuals see is that sticking to their old coping — if they go in that direction — the outcome is certain. Because they know from experience that responding the way they’ve been responding has lead them to misery. And if they continue to respond the way they’re responding and their life isn’t going to magically change around them, well they can expect that they can continue to be miserable.

So holding onto it leads to a certain outcome. But if they want to have a different outcome, if they want to have a their life improve and get better, it means letting go of that certainty and stepping into the unknown. And in DBT we call that willingness.

Willingness is when you can see what you’re doing or tempting to do doesn’t work; when you can see that there is another option to try that might work — not that it will work — but that it might work. Willingness is stepping into that new behavior to see what happens. And learning in the process of successes and failures — gradually moving forward, gradually doing things, gradually seeing your life improve — but there’s going to be lots of stumbles along the way.

AW: Willingness is almost like having the faith to put in the work that you need in order to progress on…

There’s a quote from Martin Luther King that I came across, that talks about faith, and I bring it up sometimes when I’m teaching about willingness… that faith is walking down a dark staircase not being able to see the next step.

I think that for an individual with BPD facing recovery, that’s what it is — taking that step, it’s putting trust into… if they’re working in therapy  it’s putting trust in the therapist, in the therapy, and it’s terrifying because you can’t see; you can’t quite see the path.  They just know that they don’t want to be where they are and we as therapists help orient them to keep their eye on the prize — where would they like to go with their life, where would you like to see your life move.

Dr. Axelrod on the future of research in recovery:

The thing that I’m aware of is that we have not even begun to know really what recovery is in terms of through research, in terms of empirical studies. There’s really only the very beginnings of  research — nothing solid about looking at large numbers of individuals.

How many people go through therapies actually end up in recovery? How many people who don’t go to therapy end up in a state of recovery? What does recovery look like? I gave my description based on my clinical experience but we know from research, we know from the history of borderline that the difference between clinical impressions and reality from research can be greatly different.

Clinical impressions taught us for years and years that individuals with BPD don’t change and that the diagnosis is basically a life sentence but when we finally looked at that in large numbers, we found results that were starting to come aware of that that the diagnosis drops off for most individuals.

We’ve also learned, unfortunately, that most individuals without very focused treatment continue to struggle with their life functioning. We started to see some suggestions of recovery with targeted treatments. But we know so little about it — so little about the lives of individuals who are in recovery and identify themselves as being in recovery. The impressions that I’ve given — how common are those? Are there other things that didn’t enter into this conversation that are very crucial parts to the story — both in terms of people’s subjective experience also in terms of neuroscience?

We’re learning more about what does the brain look like for individuals with BPD when they’re experiencing their pathology, when they’re experiencing their suffering. But what do brains of individuals in recovery look like compared to those who never had borderline, what does it look like before and after treatment — people are starting to do that research but we really don’t know that yet.

So I’d really like science to advance these issues and inform us therapists.

Dr. Axlerod on what recovery looks like:

If we’re talking about individuals who are coming from a place of feeling out of control, being out of control in terms of their emotions, in terms of their reactions, really caught in misery… I think that recovery as individuals who have developed controls, who not only developed controls of their behavior and have been able to manage their moves but have also taken steps forward in their life so that they are seeing themselves in the process of building a life that they wish to live, that  they’ve put things into their life that they would want to maintain. They’ve gone from a place where they could do that to a place where they are clearly starting to do that or have put together a life that they wish to continue to live.

One thing that has been my experience with such individuals who are in recovery from BPD is that they’ve developed insight into when they get experiences of being under stress, under unexpected stress, of mood episodes, difficulties with thoughts or urges about self-destructive behaviors, a thought that they should kill themselves, a thought that they should hurt themselves, or a really intense desire to hurt themselves — that they’ve developed insight as seeing this as an understandable reaction given that it is in their history.

Given that they used to cope that way and that they’re prepared to cope that way, without the panicking, without the fear of oh no, I have the thought of killing myself and that means my whole world is going to fall apart again and go back into self-destruction, I’ve seen individuals who can say, oh, I just had the thought I want to kill myself — something must be bothering me. There must be something going on.  

And to look at things and take a step back and see what’s troubling them and maybe look to their supports, but to do so with confidence, that they’re still committed to living their life, still committed to going forward and that they will go forward. That the “bump” of something in their mood, thoughts or urge isn’t more than that — that it’s information that there’s something they need to pay attention to, but it’s not determining what’s going to happen next in their life. That they’re not going to unravel and I think that’s a critical period for individuals in recovery to develop mastery, that insight, and develop the sense of mastery that they’re life can go on and that the individual embraces it.

I’ve seen several individuals embrace the notion that they have interpersonal sensitivities, they have urges that may pop up, and that it’s worth living their life, and it’s worth taking care of themselves effectively when those kinds of things come up. Because they’re going through life and they want to keep living their life. I see that at this point as kind of a working definition or world examples of things that I associate with BPD recovery.

As you know I’ve begun the journey to write a book and just wanted to share with you the main synopsis. I would love your feedback, thoughts and please let me know if there’s anything in particular you want to see happen with this book. Here’s the general idea behind the book:

Although borderline personality disorder is treatable, the gap between remission and recovery is a large one — a divide that research is just beginning to tackle. Until the evidence is there, what can we do? What makes a small percentage of over 16 million Americans with BPD recover, leading “lives worth living,” while others plateau, stuck in a revolving door of hospitalizations? The book, BPD and the Quest for Recovery searches to understand what makes recovery the exception and how to make it the norm.

Written by a woman diagnosed with the illness, Amanda Wang will uncover the world of recovery through scientific research, clinical anecdotes and personal patient stories. BPD and the Quest for Recovery brings those living with BPD, families and loved ones, as well as clinicians and researchers along for an investigative ride, helping shed light to the disorder. It will discuss:

• What BPD recovery looks like scientifically and anecdotally.
• Who the likely candidates are and what characteristics they share.
• What makes some patients recover from BPD while others plateau.
• Whether BPD recovery can be taught.

BPD and the Quest for Recovery will also take readers beyond traditional clinical/self-help books — as well as strict memoirs — by bridging these two spectrums together. This book is not only the author’s personal quest in understanding recovery but of other individuals as well. Some will even be showing us what being given a second chance means and what they have done about it. From New Haven, Connecticut, to Seattle, Washington, BPD and the Quest for Recovery embarks on a shared journey — in hopes of rising above the challenges of a suffering people.

Myths & Misunderstandings of Borderline Personality Disorder from Amanda Wang on Vimeo.